Lost trust in elastography

[Linakes]

After reading scientific studies I though fibroscan and other type elastography was pretty accurate in rulling in or rulling out fibrosis/cirrhosis, but i got serious doubts after reading here. Plenty of people having very low results even when they show typical signs of advanced cirrhosis. I know no test is 100% accurate, but it seems like its more normal to have low kpa then high kpa with cirrhosis. So confusing

[hells456]

They are accurate. The three main symptoms of advanced cirrhosis are HE, varices and ascites and are swiftly diagnosed when present. All other symptoms are shared with a lot of other conditions, such as anxiety, depression, bowel issues, autoimmune conditions, fibromyalgia and many more.

Usually a fibroscan, ultrasounds or blood tests will quickly rule out if the liver is the cause. The trouble is that some patients get it stuck in their head that it's their liver and instead of continuing to search for the actual cause will disbelieve their tests and distrust their doctors.

[AyrshireK]

Fibroscan if anything may give false high results rather than missing GENUINE liver ill health. In my 10+ years on the forum there have been few to no cases where people have been told there is no issue only to find there actually was.

Most of the posts were people believe their symptoms are liver related are drinkers, ex-drinkers who can't accept they've dodged a bullet and still believe that despite test after test clearing them that doctors and tests are wrong. Health anxiety then leads them down worm holes and hyponchondria sets in, seeking out every symptom and believing it liver related.

Fibroscan can give false high results in the presence of on going inflammation but not normally false lows.

Katie

[Linakes in reply to AyrshireK]

I dont know, I have resd quite a few stories where peoplw show terrible symptoms that aound 99% liver related, but have normal fibroscans. I read that fibroscan miss cirrhosis in 11%, but reading here seems it happens much more frequent

[pushthrough in reply to Linakes]

I have heard of false readings when the BMI is above 30 or those with arld didn’t quit consuming alcohol long enough for liver swelling to go down prior to the test. The latter would result in a higher reading as far as I know. You have to consider who’s giving these tests and interpreting them. I can tell you that the mri with elestography is the gold standard for assessing damage and staging combined with blood work. I would be interested to see the articles you are citing. What was the sample size? Were these physicians specializing in liver disease? What countries was the data pulled from? Was bmi considered prior to giving the tests? What were the demographics? Were those calculated in the percentage a mixture of hep c, arld, autoimmune, nafld/nash. What was the breakdown of those subsets percentage wise? There are a lot of things to consider.

G.

[LeverHead in reply to AyrshireK]

Indeed. When I was infected with hep c my stiffness was 9.1 kpa. Always stable in almost five years of periodical checkups waiting for the pills. As soon as I cleared the virus from my bloodstream stiffness quickly went back to normal ranges in a mere few months. But I've never heard the other way 'round. Usually fibroscan is a tool used along with blood work for doctors to have a better understanding of the situation.

[VeeWat in reply to LeverHead]

what stage C were you?

[LeverHead in reply to VeeWat]

In what sense 'what stage'? I've had it for about 4 year and an half, maybe 5, bloodwork always been slightly higher (ALT) but not much and each fibroscan I underwent always scored the same, 9.0/9.1 and around that. So, F2 fibrosis. But as I've said, as soon as I got cured from the virus everything went back to normal. Never had a problem.

[Chick_atee]

Liver disease is complex and unfortunately a difficult illness to understand in many ways. I think any of us who are living with it have many questions and will continue to have them. Livers are unpredictable.

It’s natural to have doubts and questions about scans, tests and symptoms. Keep discussing with your medical team. That is and should be their job to put your mind at ease.

I feel a lot of this worry and stress (causing extra cortisol which liver patients don’t need along with everything else we struggle to expel through our systems) could be avoided upon diagnosis of the disease. A general medically approved and regulated document of what may or may not happen to you depending on the type of liver disease you have. Open a box of medication and you will see symptoms, possible side effects etc. The consultant and team should guide you through this.

This needs to happen in order to help patients best understand their disease from the beginning. Patients would be alot less worried and stressed.

Thank goodness for this forum and you are right to ask your questions.

The medical approach needs to change drastically in this area for the patients health and well being. It’s confusing and certainly not healing.

Hope you get a satisfactory answer to your query.

I don’t agree with the comment about recovering alcoholics developing hypochondria in relation to liver disease. Alcoholism is a disease recognised by the WHO and greatly misunderstood.

[EmmaThom]

I have decompensated cirrhosis with HE, varices, portal hypertension and ascites (being successfully managed with spirolactone and furosemide). My Hepatologist has never referred me for a Fibroscan and I've had no liver biopsy either- he said all my symptoms are enough for an accurate diagnosis. I have had ultrasound, CTs and I'm having a MRCP (MRI) scan on Saturday.

[Chick_atee in reply to EmmaThom]

If it eases your mind a little I have only had ultra sound, endoscopy, sigmoidoscopy to date along with bloods being checked. My diagnosis is decompensated. No other tests have been recommended for now.

Symptoms I have are: ascities managed with dueretics. Weight & muscle loss, extreme fatigue, excessive gas & nausea and bowl movements are not predictable.

What I do to help myself: try to meditate, try to stick to a low sodium diet, check out this forum and research without getting too bogged down. Starting fortini & pro cal shot for energy, fat & nutrition.

Try to set myself little goals. My next one is to be able to go for a walk again when I build up some energy.

Wishing you the best.

[Linakes]

Sometimes it seems that the only way to get diagnosis is to get decompensated..

[AyrshireK in reply to Linakes]

What tests would you actually like? What do you need to convince you that you do not have cirrhosis only some slightly heterogenous change?

All your tests to date say no to there being any cirrhosis.

[Linakes in reply to AyrshireK]

Because i havent been told what does it mean. If its not cirrhosis it must be something else, because healthy liver look homogenous.

[AyrshireK in reply to Linakes]

I thought you'd been told you have a bit of steatosis i.e. fatty liver which will/can account for the mild change in liver texture.

[Linakes in reply to AyrshireK]

I read you cant see fatty liver or even early cirrhosis on CT.

[AyrshireK in reply to Linakes]

You have been reading way too much and should concentrate on healthy diet and exercise - you are going down the path of health anxiety. Obviously your scan HAS picked up slight liver changes which means it is still at a stage you can stop progress and reverse damage. You don't mention having any specific liver symptoms and all tests to date have largely been clear.

If CT scan had found cirrhosis the report would have said so. If there was cirrhosis then 3 seperate fibroscans/elastography wouldn't have missed it.

Constantly going over and over and over and convincing yourself that doctors and tests are wrong is going to make you physically poorly, you'll start finding symptoms that 'prove' your hypothesis that doctors are wrong.

As i've said before there are next to no patients on here who have had genuine cirrhosis missed on scans - yes there are tonnes of people who claim to have liver symptoms and this isn't seen on scans but they are trying to convince themselves that doctors are wrong too. There are other liver conditions like the focal nodular hyperplasia that some folks have that doesn't show up on tests for cirrhosis and that's because it's not cirrhosis but a different condition of the liver.